Hello all. My wife has Lupus, FM and RA. she told me about this site. I am here in an effort to better understand how to relate to her during this whole thing and maybe find a way she can better deal with it. I'm open to any and all advice. She is 40, I am 44. We have been married for 18 1/2 years. She was dignosed in 2001, right after i had major neck & back surgery. We have had our share of hard times. There are times she does well, but when she has a bout she is down and out. I feel so helpless and useless. Nothing I do seems to help. I take pain medication for chronic pain, and I do give her some when she needs it. We have no insurance, and so far we have dealt with it using over the counter meds and such. She says she needs to get back on plaquinal.(?) I just don't know what to do sometimes. I have a fairly good understanding of the pain part- having nerve damage and arthritis myself. As far as the exhaustion and the other issues I don't even know where to start. She works part time at a local library, but that is even difficult. I am trying to get insurance so she can at least see some doctors, but the plain truth is we are stuck. I can't help but wonder if she shouldn't go on disability. At least it would provide some income and she would feel as if she is contributing to the household. Our kids- daughter 17 and son 14 - are mostly supportive, but don't get it through their heads that just cause mom's home doesn't mean all the housework gets done. I could use some advice.

tgal

03-15-2012, 12:14 PM

Hi David! Welcome to WHL! It is so wonderful when a spouse come to try and understand what this disease is about. As you know by now it doesn't just affect the sick person, it affects the entire family. Everything changes and we all have to learn to deal with it. Please make yourself at home and feel free to ask any questions that you have. We are all here for you just as you are trying to be for her

magistramarla

03-15-2012, 12:23 PM

Hi David,
Welcome to WHL. It's wonderful to see a supportive spouse here. So many partners have a difficult time dealing with their loved one's diagnosis. We're glad that you are here to support her. I look forward to hearing your perceptions on our conversations here.
Hugs,
Marla

steve.b

03-15-2012, 06:48 PM

david,
may i start by saying thankyou.

it is not often that a partner cares enough to become a member of a site like this.

there are a couple of quotes / letters that may help.
one is called "the spoon theory".
the other is called "a letter to normal people"

both are written by people who are in a similar situation to your wife.
they are ways to try to help others understand.

we have several threads in here on the subject also.

again thank you for caring enough to join us.
you are a very welcome member.

rob

03-16-2012, 06:06 AM

There are times she does well, but when she has a bout she is down and out. I feel so helpless and useless. Nothing I do seems to help. .

Hello David,

One of the greatest gifts a person with Lupus can have, is a spouse, friend, or family member who is supportive and willing to learn more about the disease.

I don't think you are helpless, or useless.

Welcome to our group,

Rob

debbie-b

03-16-2012, 06:41 AM

Hello David,

You are a great husband trying to find out how you can help your wife.
Like Rob said, to us lupus sufferers, the loving, caring, support of our loved ones, is one of the most important things to us.
Our loved ones can not stop our pain, or fatigue, but boy their love will help us to go through it alot better.
Fortunately I have a great husband, who helps and understands, that makes a big difference.
I am convinced, not having support and understanding, makes things alot worse and harder to deal with.
You're a great guy.

Debbie

kim,l

03-18-2012, 03:28 AM

hello david welcome whl family i have lupus and i have a very loving and caring spouse who has learned to adjust to my lupus and is in tune with how i feel you are a very good man.